On raising a son on the autism spectrum, progressive politics, pop culture, and coffee addiction.

Tuesday, July 27, 2010

Questions of life and death

Here's a question: How do you introduce the concept of death to a child with an anxiety disorder without creating intense anxiety for him?

And here's another: How do you introduce the concept if the child has autism, which means that 1) he has trouble understanding the abstract, and instead focuses on the very real and the very concrete and 2) he is prone to perseverating on issues and can zero in on a single topic for hours, days, or weeks at a time?

In other words, how do you introduce the concept of death to this child without planting the seeds of worry that will swiftly grow into "I will die" and "you will die" and "it could happen any time"?

How do you introduce the concept and then expect to ever have a conversation with this child about anything else for the rest of his life?

Weighty issues for a mid-summer night, I know, but it's a topic that has been on my mind a lot, because in recent days, some new words have crept into Bud's vocabulary: Guns. Kill. Die.

They are words he uses with a worried tone.

"Mom," he said as we were driving to summer school yesterday, "if people are killing me with guns, I'll hide behind a rock."

I nearly drove off the road.

"Bud," I said, "that would never, never happen. Where did you hear about people with guns?" I couldn't imagine the source. As far as I knew, Bud had no frame of reference for killing and he had no idea what a gun was. The only television shows that he watches are preschool programs, none of which have such dark themes. He doesn't even see commercials.

Which means that he has been processing those images on his own for at least a month.

I reminded Bud that things that happen in movies aren't real, but since we were nearly at school, I didn't pursue the conversation any further. Instead, I decided to think about how to approach the issue more thoughtfully.

Tonight at bedtime, before I'd had a chance to develop a thoughtful plan, Bud raised the issue again.

"Mom, those are guns?"

"What are guns, Bud?"

"Guns are machines."

"No, I know that. What guns are you asking about?"

"At the pharmacy? Those are toy guns?"

"I guess they do have toy guns at the pharmacy. I don't really think guns are good toys."

"They're bad?"

"Well, I don't like them."

"Guns are bad, Mom?"

"Well, guns aren't toys, Bud."

"Guns kill elephants?"

What???

"Did they shoot elephants in Chitty Chitty Bang Bang?"

"NO! They shoot people in Chitty Chitty Bang Bang."

"Who shoots elephants?"

"The hunters do!"

"What hunters?"

"In the BOOK! In summer school! That I read with Ms. Barr."

"Oh. What happens when they shoot the elephants?"

"They kill them."

"What does kill mean?"

"It means they die."

"Oh. And what does die mean?"

Bud thought about it. "Well..." he said, "it means they get sick."

"And then what happens?"

"They go to the doctor."

"And what happens after they go to the doctor?"

"They take their temperature."

Ah. His constructed understanding of killing and death - already disconcerting and alarming to him - is missing a critical element.

Which is why I find myself, in the middle of this lovely summer, with dark and weighty issues on my mind.

Where do I go from here?

How do I help my son understand the cycle of life and death without inciting panic?

And is preserving his naivete and allowing him to stay happily unaware truly the more compassionate path? Is it wise to take the risk that Bud will be introduced to the very idea of death when someone he loves is gone from his life?

I tried to introduce it to him several years ago when his goldfish died, but the losses barely registered with him. The fish were here, the fish were gone. The impact was minimal. But Bud is in a very different developmental place now, and the stakes feel a whole lot higher. If I don't process it with him, he will surely continue to process it on his own.

So, really: how do you do it?

How do you help a child with autism and anxiety understand death without killing his joyful and optimistic approach to life?

34 comments:

As a children's librarian, my first line of defense always comes from books. One I love and frequently recommend is BADGER'S PARTING GIFTS by Susan Varley ( http://www.amazon.com/Badgers-Parting-Gifts-Susan-Varley/dp/0688115187/ref=sr_1_1?ie=UTF8&s=books&qid=1280282962&sr=1-1 ). It is a simple but beautiful story -- very circle-of-life-ish, but won't be much help with the guns/kill questions. Still, perhaps a better way to help him address the idea of death in a non-scary way.

I don't envy you these conversations. Such a hard thing to think and talk about--for our kids and for us.

One concrete method is the hand in glove demonstration. Your spirit is the hand and your body is the glove. When you die, your spirit leaves your body and goes to a better place. Your body is dead (like it has no batteries) but your spirit is with God, and Grandma and Grandpa, and goldfish, etc.

Hopefully the part about better place and loved ones who have passed on will help with the anxiety.

If you don't believe in an afterlife, you can always use the "light out" analogy. When you die, the lightbulb burns out. You aren't sad or hurt or anything anymore, you are just gone, the light is out. You live on through the memories od others (though that's a bit abstract!)

I don't have an answer for you, but want to share how death has figured in Henry's perseveration the past few months:

My boss's father died in March. At church one Sunday (I really should write a post about how Henry behaves in church- it's fascinating), Henry and I were praying together, and I said I wanted to "pray for Rick, because his dad died." Henry took on a very somber tone and repeated "Rick's dad died."

EVERY SUNDAY SINCE Henry pipes up at some point with "Rick's dad died". I worried at first that he would extrapolate "my dad will die." And I said things like "Rick's dad was very old and sick." But Henry hasn't seemed to extend the knowledge of death into any other realm. He hasn't forgotten it either, though.

My PDD son suprised me one evening at bedtime after our story when he said, "I'll miss you." Unsure what he meant, because I wasn't going anywhere, no trips planned or anything, I asked him to explain. "When you die. I'll miss you."

They had been talking about it at school, because the janitor passed away. He was so calm, I'm afraid it was my reaction that upset him. As composed as I struggled to remain, I was startled by and unprepared for what he said.

I guess that's just it... with our children, we have to be so infintesimaly prepared ourselves for these things. Something you are, as always doing so well. Know yourself. Know what you believe and then when that moment comes, your answer will flow so naturally, with such confidence and calm and very little anxiety, that he will follow your lead.

Well, as I read this it brings me back to the day that Bud and I talked about Mr. Rogers. We talked alot about Mr. Rogers but this particular day he asked me if Mr. Rogers could come to our school. I explained in the lightest of ways that Mr. Rogers was no longer living and that he wasn't able to come to our school. We talked about how, like our favorite stuffed toys, we get tired and worn out. Mr. Rogers was tired and worn out. It didn't go much further than that. I agree that when the time is right it will all come together in just the right things to say as you process how to explain things. You know I'm one of your biggest fans and I know given your amazing talents for words...in time you will shine in your ability to help Bud process such a BIG topic.Mrs. Nee

This is so hard. We went through something similar with Sam when he was studying the life cycle of meal worms in kindergarten. One day he came home and started talking about dead and gone and buried in the ground which led to a talk about our cat who had died months before... he was very concerned that he was going to die or we were but I tried to explain that the "life cycle of people" was much much longer than that of the meal worm. He obsessed on this information for about a week and then let it go... I don't know how Bud will process it of course, but you've already had some amazing suggestions from commenters! I really like the hand and glove analogy.

It's probably been over a year since I've stopped by your blog. I don't know why I thought to stop by today, but coincidentally perseverating on death is something I've dealt with quite a bit. My husband and I both lost a parent before we were married, and by the age of about 5 my ASD son had noticed the missing grandparents. My son, who just turned 8, can tell you what they died of, the age they died, date they died, how many years it was before he was born, how old I was when they died, how many years it is until I reach the age my mom died, how old he would be if I died at that age. I could go on but you get the picture. I had no choice but to find a way to lessen his burden. The discussions took a number of months, so it might be hard to fully articulate. I'll try to give you the gist though.

First I let him know that death is a difficult subject matter for almost everyone. Having strong emotions about death, whether it's fear, anxiety, sadness, or confusion, is completely normal. Then we talked about the physical aspect where the body just doesn't work any more. It doesn't breath, eat, drink, sleep, move, or do anything that a person can do when alive. I told him about my religious beliefs on what happens to the spirit (which I described as the part of you that contains your thoughts and emotions), but I was careful to stress that these were my BELIEFS. Other people might believe something different, and this is part of the reason people find death difficult since no one knows for certain what happens after dying. I intentionally left him with no clear answer, because if he were to encounter a child with a different religious belief then it would result in one of two things, 1) he would have a fit insisting the other person was wrong, or 2) he would doubt the truth of everything we had discussed. Now, that was the quick part of our discussion. Talking about my mom dying and the possibility of me dying is what took months. I told him it made me sad that she died, I miss her, and that it makes me sad that she never got to meet him. But even though I'm sad, another part of me still feels happy. I feel happy that have I have 2 sons and a great husband. I'm happy that we get to go swimming, play outside, see movies, play games, etc. I'm happy I have lots of great memories of my mom. I'm happy I'm alive. I choose to focus on happy instead of sad. If I focus on sad all the time, then I will feel bad. I told him if I should die, he would also feel sad and miss me. But even though he feels sad, he can still have happy feelings. He can still love other people, and they can still love him. He won't be alone, and there will be many people around him that care for him. Then I tried to reassure him that I don't plan to die anytime soon. You can't control when you are going to die, but there are things that can be done to live a longer life. I take good care of my body by eating healthfully and exercising. I make safe choices by wearing my seat belt, driving safely, looking both ways when I cross the street, having friends that also make safe choices, etc. We talked about the things that make him happy and what he likes to do. That he is happy to be alive. It probably took two of three months, but he began talking about it less and less. Now if he brings it up, I try to time limit how long he can talk about the sad part (around 10 minutes) and then I ask him to tell me about his happy things. It seems to do the trick.

Take your son to a bright room and switch off the light. Ask him what happened. He will probably say “Room become dark”. Now switch on the light. Ask him what happened. He will probably say “Room become bright”. Now tell him that “Room is always dark. We only see the light thought it is dark in reality (that is invisible). Our lives are like that. Though we are alive (our reality is always dead .i.e. our body were dead before we born, our body is dead now, and it will be dead later. But we DON’T need to focus on darkness. We need to cherish the light without getting ATTACHED to it)

My son has been asking questions about death as well. I don't know where he picked up on death but the first I heard of it was when he asked of someone we had not seen for a couple of years (out of the blue) "Did they die?"

I also often hear "Mom, when are you going to die?". I'm addressing his questions as they come without having a "sit down" talk about it. The best I've managed so far is "not for a long time" while hoping it's true.

I'll be watching the comments for solid answers since I have none of my own.

If you're taking requests, I'd love to hear how you and your readers are handling explaining the concept of puberty. We're having a heck of a time with that one at our place.

Both my kids have gone through death phases. My youngest who is NT, and 3, has asked if he could see his grandmother's dead body. He has asked this a number of times. This is particularly fun for my husband, who misses his mother a lot. ('No, we don't keep dead bodies around. I'm sorry you missed the funeral. You weren't born yet.')

The real reason I am writing is because Dierks Paisley is in the New Yorker this week. I only know who that guy is because of you!

Here's how death was explained to me by a child, and it's how I've explained it to my children: Have you ever gone somewhere with your parents late at night and fallen asleep in the car, and when you got home you were still asleep, so your mother or father carried you inside and put you in your bed? That's what dying is like. You fall asleep in one place, and when you wake up, you find yourself safe at home.

I know exactly what you mean. I have tried to keep guns out of our vocabulary, but as Jayden gets older and has friends and books and movies that include these, they have started to infiltrate our life. It is so hard to explain that guns are bad and it is not okay to say you are going to kill someone because he cannot understand the finality of it. Two weeks ago we drove past a cemetery and of course I had to explain what it was. He has now been stuck on that. Yep, trying to explain that your body gets buried in a cemetery but your soul goes to heaven has not been an easy task. This is definitely a tough question.

Lots of great ideas here, but I think it is important not to be too metaphorical. The abstract only helps those who can grasp such nuances. I particularly appreciated I think Suzy's comments ... I found my son had certainly grasped the sort of "death is normal" "everyone goes through it" explanation he received at school about his janitor and took that at face value, that it is a mundane everyday thing. But it is important to acknowledge the sadness and grief so often associated with death. And to separate the nature of guns and killing from other forms of death and dying.

What an important post. I look forward to reading more of the follow ups on it. We're going to have to deal with this, at some point, with Hallie, who lost one of the most important people in her life--her twin sister--long before she was aware of much. We're not looking forward to figuring out how to address this, but we'll check with you when the time comes!

I kept it very real with my son. His understanding of death is a little clearer now, but I needed him to understand that once you die, that's it. You don't come back like in the movies.

What did I do? Roadkill.

I know, it sounds gross, but he knew what a cat was, what a cat does, etc. I showed him a cat that was hit by a car, and equated it with "this is why it is imperative you look both ways before going in the street". I told him that the cat will not ever be able to walk, eat, or even play. That was the end of the cat and there it was. And hell no you can't touch it.

I don't think it made him understand death and dying as a process, but it did help him process the gravity it.

Hi. Just came over from She Knows, it is good to connect. I don't have answers; as I read this, I understand your dilemma, but I have a child who is mostly nonverbal... I wish he was able to articulate stuff like this, even though it's really hard to know how to deal.

I guess part of the puzzle is - what do you want to impart to Bud, as your child, about death? A lot of that is based on your family's personal belief system.

My family is a bunch of United Churchers, which is so ultra-liberal that most of the rest of Christianity hardly considers us a legit church at all. Ironic when considering how ultra-liberal Christ himself was but... I digress...

My son has Aspergers and tons of anxiety, but the tackling of the death issue came on suddenly and full force for us when his grandmother (my mom) was diagnosed with terminal cancer 2 years ago. I immediately moved her in with us, knowing that while it was the right and only choice I could make, it also meant a very close relationship with death for Simon, at a very young age (he was 5).

He watcher his grandmother weaken, thin out, stop coming down for meals, and eventually she passed away (in palliative care where I moved her for her final weeks). It was hard, but it was a natural process in this world of ours, and I guess that's what we focussed on with Simon. That it is sad, and natural all at the same time. That life is both joyous and tragic, and that you can't let the tragic parts ruin the joyful ones. You need both for balance.

That wasn't imparted in one simple conversation, but over several across a few months. I also told him that if people who were already living never died, there would be no room on earth for new lives - like his own. That each of us gets a turn here on earth, some turns are short, some are long, but the goal is not to have the longest turn. The goal is to help make everyone's turn fun and safe and happy - and when we do that for others, it naturally makes our own turn more fun and safe and happy too.

We used a book called Waterbugs and Dragonflies which depicts a waterbug colony wondering what happens to their members when they crawl up the reeds - because they never see or hear from them again. The book shows the waterbugs making a promise to come back to tell the others, but when their time comes to crawl up the reeds, they turn into dragonflies and their wings don't allow them to go back into the water to fulfill their promise. It's a bit of a direct analogy to angels and heaven but in our family (where the adults don't necessarily believe in a scriptural depiction of winged angels and heaven) we use it to show Simon that your life-force, your spirit - goes to another place when you die and that other place is good and safe and OK.

Another thing to keep in mind - something that I really struggled with because like you, I wanted to keep my son as happy and content and blind to the sadness of the world as possible - is that every child - spectrum or not - loses a big chunk of their innocence when they begin to conceive of death. That's just a part of life. There's no way to avoid it. The key is avoiding language or imagery that invoke fear. Sadness is ok. And to some extent they will have to work through their own fears about death as they go through their whole life. You just don't want to be the one who planted the seed of fear. Plant seeds of awareness and spirituality and acceptance instead.

Ultimately, I think we have to focus on the up-side of being dead. The way you do that will depend on what you see as the possible up-sides of being dead. I encouraged our guy to come up with his own beliefs in this regard by getting a pile of word religion books and letting him mix and match. He decided on in a brief stay in heaven followed by reincarnation mediated by an omnipotent God who takes requests.

My thoughts on this issue are probably drastically different to everyone else but I guess it can't hurt to hear a different point of view.

Bear in mind that just because this works well for my children, it doesn't necessarily follow that it's the right choice for your child. My kids are both on the spectrum but they don't have anxiety issues.

Also, we don't have a gun problem in Australia. It's rare that anyone sees a gun here - except on the belt of a policeman.

My kids have always been brought up to understand that weapons really exist but that they are usually only to be found in fiction.

My kids play things like Duke Nukem on computer and they watch things like Terminator. They were watching these sorts of shows from about age 4. Of course, they watch and play lots of things of varying intensity. Some are cute and cuddly, some are not.

I tend to steer them towards obvious fiction like Sci-Fi and Fantasy rather than things that could happen in the real world.

We watch the "making of" featurettes which come on DVD together. We talk about CGI and prosthetics and they have a very healthy appreciation of the role of fiction in our society (ie: Entertainment).

I've found that many kids who have anxieties don't have a good distinction between fact and fiction. They don't watch much "violent" TV.

It's a chicken and egg thing. I'm not sure if violent TV makes kids have anxieties leading to the removal of viewing rights - or - if reduced viewing rights leads to poor perception of fiction and therefore increased anxiety.

It probably differs from one individual to another.

My kids are also well exposed to death through Grandparents, Friends and Pets. We look at old photos and I tell them how much I miss people. They understand that it's permanent.

I talk about religion a lot but my kids are told that there are several beliefs and that nobody actually knows. We just have faith - which is like "super-hoping". They're brought up Catholic but I'm always encouraging them to see other people's points of view too.

They know that you have to make the most of life while it's there and not to waste time worrying about things that will happen regardless of what they do.

I don't know if my philosophy is appropriate but it's working so far with my kids.

It seems the issue here is more guns than death... but here's my experience:

Wulf is 18, non-verbal, very "involved," and lives in an IRA. He was very connected to his sister - who passed away on the 4th of July.

Bearing in mind the differences among individuals, I can say that there is nothing out there on how to handle this. We brainstormed with a circle of therapists (he works with Ede, so we're talking top-flight people), and the best they could come up with was to "follow his lead" and to not bring it up unless he introduced the subject... to keep her bedroom as-is, similar to a sibling going off to college. Nonsense.

His sister, btw, had Downs Syndrome, and was in a fabulous program... her peers were also at sea (one parent said she'd gone to sleep - so the kid got insomnia, and kept asking why we didn't just wake her up.

I've learned that death, like sex, is a tabu subject that the MR/DD community is very uncomfortable with.

And, you can apply the same guidelines, acknowledging that our guys are visual processors... I crafted something like a mass card, with her picture, for her peers, and a note that no one can say for sure where we go when we die, but we can always remember...and a short poem.

Her brother is still adjusting, but he has made a series of picture frames, starting with just her and family(she was older), then her and him and family, than him and family. He "gets" it - and misses her.

Again, he's - we're all - still adjusting. I think it's a good bet there will be a meltdown in the future...

I am so moved by the stories you've shared and so appreciative that you've all taken the time to craft such thoughtful responses. Though I'm still not sure what I'll DO, there is great comfort in knowing that we are not alone on this path.

Like mommy dearest, it was important for my son to understand the permenance of death. Partly because we've been dealing with depression and him saying once that he'd like for 'nobody to see him ever again'. Tough stuff for an 8 year old.

Death just seems to be one of those areas that you have to feel your way through. I didn't want him to be afraid to die. He went through a time where he was matter-of-fact about it, telling me he'd miss me when I died. This always becomes a perservation for him around rememberance day.

He understands about fish dying and takes it well. He's never known an adult who's died. I dread the day we have to explain it. So I'm trying to prepare him. We mostly talk about how, yes, we all will eventually die. Circle of life type stuff. And that, usually, it's older folks who die at the end of a long life. I was really afraid he'd start worrying about himself dying soon but that hasn't happened.

I'll definately be reading to see how you're handling this. Cause I'm going to need all the pointers I can get. And thanks to all the commenters who shared. I'm taking notes.

Hmm. A tough topic and one that I expect we'll have to handle soon. It's tricky in that Secondo has autism and Primo has social/communicative delays. Primo tended to be Mr. Literal, though he's developing quite the imagination. Anyway…

Their maternal grandfather died rather suddenly when they were six months old. [They're twins.] My father has been suffering from CPOD for several years and I suspect won't be around that much longer. Then again, he's made it further than I thought, so I'm happy that my Dad has gotten to know his grandsons. Anyway, I expect that it will be difficult to handle these issues with boys who have difficulty with abstract concepts.

There's not much I can offer you other than thanks for sparking a bit of thought about this.

Hi, I just found your blog and wanted to drop you a post. I'll be checking back to see what else you have to talk about. My oldest son (5 yrs) is PDD-NOS and he too has been talking about death and what he would do if someone took him from me. Hard to deal with and hard to talk about. I don't want to scare him, but I do want him to understand that running away from me can result in really bad things. Or that there are people out there that would take him. It is really hard. Anyway, I'm a mom blogger too and I blog about autism also. come check me out if you get a chance (I read your post about being busy but not being able to expand your blogging circle). Http://Matthewspuzzle.blogspot.com

When it comes to processing death through stories, we have elected to differentiate between being dead and being dispelled. Video game characters and story characters (both books and movies) don't die--they are dispelled. They may have multiple lives or be alive again when you re-watch the movie or as actors can come back as other characters. Being dead--which happens to real, living people and animals--you don't come back.

We chose to make this distinction with my step-son, before we knew his brothers would be autistic. But it worked for Willy as well as Brandon.

When it comes to the deaths of people they know and care about, we talk about how they are no longer with us in this world, but they are with God in heaven (obviously this strategy relies on having faith in an afterlife).

A key factor I've found is that the more anxiety you feel and express when talking about a subject the more anxiety your child is going to have. That can be about death, or sex, or any of the major (or sometimes not so major) topics that arise. So the first step in limiting your child's anxiety is learning to control your own.

Sorry, catching up. We're having the death and dying problem here, too. And yes, we made the mistake of reading Barbar to Joey one night, and it made it much, much worse. And I got halfway through Charlotte's Web, which is a favorite movie here, and realized, oh no, Charlotte DIES!!! AAAAAAAAAA!!!!!!